Right now, how guilty about your AS are you feeling? Not at all? Good. A little? Hmm, ok. Very guilty? Well, so it would seem, join the club. If social media is anything to go by, plenty of people out there are guilty of feeling guilty about their AS. But why do some people with AS feel so guilty? What role does guilt play? Is it always a negative emotion? And is there a way to tackle it?
It's not just you
Not always being able to help around the house; feeling you’re not always there for the people that matter; having to call in sick at work – or not being able to work at all. Whatever its cause, guilt is something that often goes hand in hand with having a chronic illness like AS. In arthritis research, guilt (among other emotions) was associated with a feeling that their condition constantly got in the way of normal life: for example, their ability to feel like good parents or grandparents.1,2 As one blogger with chronic illness (in her case Sjögren’s syndrome) eloquently put it: “I think it’s the loss of things that you used to be able to do that creates the special guilt for chronic illness patients.”
What's guilt for?
No-one’s saying guilt is good, but let’s try to work out why we have it. It may sound odd, but as an emotion, guilt can have its uses.3
A good analogy is physical pain: it’s your body’s way of saying that there’s something wrong, that something needs your attention. People without the ability to feel pain don’t lead normal, carefree lives – instead, they have a daily risk of constant, accidental self-inflicted injuries.
Without the sensation of pain, there’s no way of knowing action needs to be taken. Like pain, guilt isn’t a pleasant emotion, but it does have a role to play. Guilt helps us assess our actions on others; to check we’re acting in a socially favorable way. It’s part of our so-called ‘moral core’, an emotional barometer that keeps us in check. Guilt helps us to think and act like good people to those around us.3,4
Are guilty people better ones too?
In a study into shame and guilt, 363 volunteers completed a survey that assessed how prone they were to feeling guilty.5 They then took a test to identify different emotions (anger, sadness, happiness, fear, disgust and shame) on the faces of strangers. The study found that those who were more prone to feeling guilty were also far more likely to identify emotions correctly.5
In other words, people who tended to feel guilty were better at empathising with other people too.5
These findings tally with those of Dr Brené Brown – who specialises, among other things, in research into shame. In her Ted talk on shame, Dr Brown describes guilt as the positive flipside of shame. She argues that while shame correlates with negative acts like depression, addiction and aggression, the opposite is true with guilt. “The ability to hold something we’ve done or failed to do up against who we want to be is incredibly adaptive. It’s uncomfortable, but it’s adaptive.”
Getting out from under guilt
So maybe guilt can have its uses. But just like pain, too much guilt about AS surely serves no useful function and just makes people feel rotten for no reason. So – what can be done to help? If guilt really is something that’s weighing down on you, it’s definitely a good idea to ask your doctor (or another healthcare provider) for advice. Just talking about it may help unload some of the guilt you’re carrying around. They may also suggest counselling or some other form of intervention that could help you in the longer term, if you or they think it’s necessary.
Chatting to other people with AS about your guilt is a good idea too, either in person or online. If you don’t already have an online network, a great place to start is This AS Life on Twitter and Instagram. While you can’t put a price on friends and family, chatting to people in the same boat as you about how they cope with AS is an amazing source of advice and support.
But chatting to the people close to you is still vital. They’re probably, without them even knowing, the reason you feel guilty in the first place. It might be hard, but it’s important that they know how you feel. Talking about, and coming to accept, the amount of help they give you (without ever taking it for granted) could help you feel less guilty and make them feel appreciated too.
Showing your appreciation in other ways would also help you (and them) to feel better. It could be a meal, a baked cake or a surprise gift. It doesn’t have to be anything big or expensive – just a gesture to show you appreciate how much they do for you. It could be a posted letter, card – even a tweet. If you’re feeling guilty, channel it in a new direction. Try to turn something negative into something positive and get to grips with guilt.
This article was written by one of the resident experts at ThisASLife.com. A social site helping the whole AS community to: Learn. Share. Inspire. Discuss
1. Barlow JH et al. Patient Educ Couns 1999; 37:141–151.
2. Mitton DL et al. Musculosketetal Care 2007; 5:191–205.
3. Tangney JP et al. 2007; 58:345–372.
4. Mendez MF. CNS Spectr 2009; 14:608–620.
5. Treeby MS et al. Cogn Emot 2015 Aug 11:1–8 [Epub ahead of print].